How the CF community helped shape a CF diabetes clinical trial
Nearly 3 in 10 people with CF over the age of 10 are receiving treatments for CF diabetes. CF diabetes is a distinct form of diabetes unique to people with cystic fibrosis. The signs and symptoms of CF diabetes share similarities to both Type 1 and Type 2 diabetes, but the underlying cause is different. It is a difficult illness to manage alongside other CF symptoms. Having CF diabetes increases the burden of treatment and there is a risk of serious long-term complications, including impacting eyesight and kidney function.
Through her ‘CL4P-CF’ research study, Cambridge-based researcher Dr Charlotte Boughton wants to find out if new ‘closed loop’ technology, used in the management of other forms of diabetes, can be used to improve the lives of people with CF diabetes.
I’d describe managing my CF diabetes as like constantly being on a rollercoaster. It’s juggling what I eat with how much insulin I’m giving myself – sometimes it feels like half mental maths and half guesswork!
Annabelle, who lives with CF diabetes
“Control of their diabetes was a more relevant outcome than lung function”
When Dr Boughton was planning how to run the study, she got input from the Trust’s Involvement Group. “Coming from a non-CF background, I had heard that ‘people with CF don’t want insulin pumps’. But I heard different views from people living with CF and their loved ones who took part in a focus group run by the Trust,” Dr Boughton said.
“After I explained how the closed loop system works, they thought that people living with CF might find them really helpful in managing their diabetes – in fact, several participants in the focus group were interested in taking part in the study!
“They also told me that better control of their diabetes was a more relevant outcome of this study for people with CF, rather than lung function, which is what I had assumed.”
A closed loop system for monitoring diabetes
A closed loop system is a glucose sensor (similar to the Libre device that some people with CF have already), an insulin pump with tubing that goes just under the skin that delivers a constant amount of quick-acting insulin, and a phone app.
The programme in the app uses the sensor data to control the levels of insulin given by the pump. The sensor, pump and phone app are linked via Bluetooth. The app is written to be able to learn about people’s glucose levels over time, as it becomes familiar with the user’s daily routines. Closed loop systems can remove the burden of manually monitoring glucose levels and adjusting insulin doses. Using this system people only need to tell the app how much insulin to give at mealtimes.
How the results could make a difference
An important part of the CL4P-CF study will be conducting in-depth interviews about the experiences of using the closed loop system for people with CF. The clinical measurements along with survey results will provide evidence on whether this technology will be helpful for people with CF diabetes in the future. If the study is successful, the results will be an important part of the approval process for using closed loop systems on the NHS.
Watch Dr Boughton talk about her research
Dr Boughton gave a talk about this research study at our UK CF Conference in October 2025. Her talk starts at ~24 minutes into the recording.
For more examples of how our research is accelerating progress towards a life unlimited for everyone with CF, read our 2026 Research Impact Report.